Changing Prospects: eHealth to improve supportive care for cancer patients. Irma Verdonck-de Leeuw and Nelly van Uden-Kraan VU University, Clinical Psychology VU University Medical Center, Otolaryngology / Head & Neck Surgery

Cancer: incidence and prevalence Incidence: almost new cases per year age:70 % older than 60 years 20 % between 45 and 60 years 9 % younger than 45 years 1 % younger than 15 years Survival: about 60%, dependent on type and stage of disease Prevalence: patients living with cancer (estimation) iknl.nl

Increase in the number of cancer survivors Earlier diagnosis, Improved therapies Greater emphasis on quantity AND quantity of life Cancer is seen as a chronic disease at least for some types of cancer as breast, prostate cancer in an early stage Burden on health care delivery systems » Innovation of our care delivery models in general » Focus on cost in relation to quality of care Current focus on cancer survivorship

Cancer Care Pathways DiagnosisTreatment Recovery and adjustment Long term monitoring Early monitoring illness End of life care

Cancer Care Pathways: examples Breast Prostate Lung Head and Neck Melanoma Colo- rectal …..and more

Breast Prostate Lung Head and Neck Melanoma Colo- rectal     …..and more OncoKompas

Head Matters: Guided self-help exercises during radiotherapy to prevent speech and swallowing problems Ingrid Cnossen

Selfmanagement portal for larygectomized patients

Stepped care targeting anxiety and depression Stap 1: Stap 2: Stap 3: Stap 4: Watchful waiting Zelf-hulp Gesprekstherapie Psycholoog en/of Internet / boekje verpleegkundige antidepressiva Voorbeeld van aantal patienten in: (hersteld) uit: Week Anne-Marie Krebber

Head Lines: Guided self-help targeting anxiety and depression

Screening / monitoring quality of life in clinical practice

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Participatory design approach 13 Needs assessment among patients and care providers User performance and satisfaction Cognitive walkthrough by experts Feasibility study (Cost)effectiveness Implementation study Designing program Usability testing Effect evaluation Development cycle Studies

Development cycle OncoKompas Step 1: Qualitative needs assessment patients (N=30) Step 2: Qualitative needs assessment multidisciplinary oncology team (N=11) OncoKompas prototype (OncoKompas 0.1) Step 4: Usability study among HNC patients (N=18) Step 5: Cognitive walkthrough care professionals (N=21) OncoKompas 1.0 Step 6: Feasibility study among HNC patients (N=61) 14

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constipation diarrhea nausea or vomiting lack of appetite swallowing speech mouth functioning shoulder functioning ENTspecifictumor loss of taste or smell hearing dyspnea lymphoma

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Feasibility study (1) Aim multi-centre pilot study To assess feasibility of OncoKompas in clinical practice in patients with head and neck cancer Study design Baseline measurement OncoKompas is made ​​ available to patients at the VUmc, LUMC and Maastricht UMC Quantitative (satisfaction) survey Participants (N=61) 36 men and 25 women Average age: 58 years (24-73 years) 27

Feasibility study (2) Mean OncoKompas score: 7 (1-10 scale) Positive findings 75% would recommend OncoKompas to fellow patients 80% could easily find relevant information in OncoKompas >60% satisfied with the supportive care options offered Considerations 35% indicated that certain questions were difficult to answer 31% felt that going through the OncoKompas took too much time OncoKompas should be made available on a tablet 28

Up-dating OncoKompas Adding tumor specific modules Development of new functionalities (e.g. zip code specification) Optimizing OncoKompasUpcoming studies 29 Needs assessment among patients and care providers User performance and satisfaction Cognitive walkthrough by experts Feasibility study (Cost)effectiveness Implementation study

Contact informationQuestions Nelly van Uden